From Brain Tumor Tragedies, Hope Emerges

From Brain Tumor Tragedies, Hope Emerges

Potomac is at center of Washington’s brain tumor research fund-raising community.

Lisa Peabody’s three children have different ways of coping with death of their sister.

“All three of them did a lot of yelling. My son, who’s 12, he drew a lot of pictures and cartoons. That was his way. And then one day I came up and he has it upstairs, it was a beautiful web drawing with her picture in the center and all these webs like they do in school, they make those web-like flow charts. And each one of the arms coming out of it is something wonderful about her. And it’s beautiful. … It was his way of honoring her and memorializing her,” Lisa Peabody said.

“Megan [10] she just cried and screamed, just cried and screamed for days,” she said. “Lydia [6] always says, ‘Just hug me and pretend I’m Caroline. I’ll pretend I’m her.’ That’s how she handles it.”

Caroline Peabody died April 29 of last year from a tumor of the brain stem. She was 15 months old.

JOSEPH WEINBERG was head rabbi for 12 years at Washington Hebrew Congregation.

“[He was] running around day and night as a rabbi does and really all of a sudden in the middle of a memorial service he was getting words mixed up. Next thing you know we’re at the hospital looking at an MRI and in your wildest dreams you don’t expect someone to come back and say it’s a brain tumor. It was horrific experience,” said Jonathan Weinberg, the rabbi’s son.

Rabbi Weinberg was diagnosed in the spring of 1998 and died in October 1999.

“He was diagnosed, had surgery and then was right back out bar and bat mitzvaing kids. … A year later [he] had to have a second surgery, was down at Duke University for that surgery. This is not minor surgery, this is brain surgery. And he had it on I think it was a Monday and the following Sunday he was at confirmation at Washington Hebrew, up on the bimah, confirming the class, head in bandages but he was there,” Jonathan Weinberg said.

BARRY GLASSMAN lost his best friend in high school.

“He was my childhood best friend, that kid that you meet in first grade when you’re riding your bike. We went to school together, camp together, Hebrew school together,” Glassman said of Seth Feldman, who died after a three and a half year battle.

“I watched him through times where he couldn’t watch TV and couldn’t read and couldn’t go through a lot of things. But his teachers helped him by tutoring him and reading to him and coming by the house” and Feldman graduated on time. He planned to attend Dartmouth College.

THESE ARE the stories of brain tumors, a diverse and little-understood category of cancer, that research advocates say are not receiving the attention they deserve. Peabody, Jonathan and Joseph Weinberg, and Glassman, all of Potomac, indicate that the problem is both far reaching and close to home.

Potomac is the nexus of a local community stricken by a rash of brain tumors and focused on finding a cure.

Several members of the 250-student Seven Locks Elementary community have been affected by brain tumors. In addition to the Peabodys, a Seven Locks family, parent Amy Gleklen lost her father to a brain tumor six years ago. Gleklen and others said that a Seven Locks teacher has also been affected. Jonathan Weinberg and his brother Josh grew up less than half a mile away and attended Churchill High School. Glassman lives in Potomac. Lionel Chaiken, a leader in the Washington brain tumor research community who lost his daughter Pamela to a tumor after a prolonged struggle, lived here for years before moving to Frederick. Pamela graduated from Churchill.

Brain tumors affect 200,000 people annually in the United States. They are the leading cause of solid tumor cancer death in children under the age of 20 and the second leading cause of cancer death in men ages 20-29. There are currently no known causes of brain tumors and the cure rate for most brain tumors is significantly lower than that for many other types of cancer, according to the Brain Tumor Society.

The Boston-based, non-profit Brain Tumor Society is among the nation’s leading brain tumor research and education organizations

Howard A. Fine, chief of neurooncology at the National Cancer Center at NIH said that there is debate in the research community about whether or not brain tumors are on the rise.

“We’re clearly seeing more brain tumors, but is it because there are more brain tumors in that group or because we’re diagnosing it more?” Fine said, noting rapidly improving and more common imaging technologies.

Fine said that a recently completed epidemiological survey marked a significant step forward in the understanding of brain tumors. The survey indicated a peak in frequency during the first five years of life, a dip until early adulthood and then a steady rise in cases until about the age of 60, where the frequency levels off.

The survey confirmed for researchers that there are no known behavioral causes of brain tumors. Dispelling one misconception, he said, “The first thing that we looked at from that study and in a paper we published in the New England Journal of Medicine, we showed that cell telephones has nothing to do with [brain tumors.]”

But Fine said that what researchers are beginning to understand is the molecular and genetic underpinnings of the tumors, knowledge that will someday allow doctors to pinpoint and destroy the cancerous cells while leaving healthy cells undamaged.

Such treatments are already available for other kinds of cancers, he said.

“We’re beginning to make inroads with a disease that we haven’t made inroads for more than 15 years,” Fine said. “I think the future is incredibly promising and bright and having been in this field 15 years and I’ve never been as excited as I am right now.”

DEPENDING ON their size and location, brain tumors often affect victims’ speech and cognitive abilities. Life expectancy after diagnosis varies depending on the type of tumor and age of the patient. Pamela Chaiken survived 13 years. Joseph Weinberg lived a year and a half.

Caroline Peabody survived less than two months.

Caroline was a seemingly healthy baby until the age of 11 months. She was late beginning to crawl, so her doctor recommended a routine evaluation by a physical therapist to check for motor problems.

“My other two kids were both in physical therapy. … We had a physical therapist evaluate her, not even in any hurry,” Lisa Peabody said. The therapist made a routine referral to a neurologist due to signs of unevenness in Caroline’s development on her left and right sides. Again, the problem was only a mild concern and the Peabodys made an appointment to see the neurologist several weeks later.

“I don’t think there’s going to be anything that I’m going to see, but let’s just do an MRI, I’ll feel better about it,” Lisa Peabody recalled the neurologist saying. “They were shocked there was a very large tumor the size of a jalapeno pepper in her brain stem.”

That was the beginning of two months of living in the Intensive Care Unit of Children’s Hospital for Lisa and Chris Peabody.

Within two weeks of her diagnosis, Caroline Peabody became paralyzed and had to be fed through a tube. She died April 29, 2004.

“Each of these days reminds me of something horrible that was happening,” Lisa Peabody said. “Every other day there was some trauma that was going on.”

Lisa Peabody recalled this example: “She perforated her duodenum, that’s the connection to your large and small intestines. And she was really sick. They had to refuse surgery because she was septic … where your body is so severely filled with bacteria that you almost freeze and all the blood goes to your torso to protect your major organs, so if that happens they can’t get a pulse, because your body just clamps down and they wouldn’t do surgery on her bleeding duodenum because they couldn’t get a pulse.”

Lisa and Chris Peabody made a decision to stop sleeping in the ICU after a night when Chris was left alone handling the gruesome life-and-death decisions that terminal illness poses. They decided they would rather receive a phone call from the doctors when the end for Caroline was near, and be there with her, together.

“It’s like your standing there and you’re watching someone drown and you don’t know how to swim so you know you can’t jump in and save them. And you’re standing there and you really, really want to jump in and save them,” Lisa Peabody said.

Eleven days before Caroline died, Chris Peabody learned about a 5K race in Washington, D.C., the Race for Hope, which raises money for brain tumor research. Caroline died three days before the race. But Chris Peabody ran, and at the race, Chris and Lisa Peabody presented a check for $32,000. In 11 days, they became the year’s top fundraiser.

“There was no $25,000 donation. It was hundreds and hundreds of $20. People were so upset that there was nothing to do for this dying baby,” Lisa Peabody said. “It gave us some kind of feeling of being able to help.”

THE ANNUAL RACE for Hope event includes the presentation of the Rabbi Joseph P. Weinberg Triumph of the Spirit Award, for patients and families who have shown courage and resilience in the face of adversity.

Lisa and Chris Peabody are among this year’s recipients.

Jonathan Weinberg, the rabbi’s son, said that such courage is increasingly the norm in the Washington brain tumor community.

“That’s overwhelmingly ... the approach I see,” he said. “To not just sort of wallow in self pity, but to get busy, to do the stuff, and to enjoy every day, each moment. And that’s something that my dad talked a lot about in his sermons. It’s easy sometimes to stand up there in front of a congregation and say it, different to go out there and practice it and learn it.”

(See related story, "Families Emerge from Tragedies to Race for Hope")